Subclinical Diagnosis

When a parent brings their child in for evaluation, I naturally assume first that there is something out of the ordinary. At the very least, there is something out of the ordinary from the parent's perspective. The parent is worried about their child and wants to either make sure there is nothing wrong, or if there is, then it is identified so they can take whatever steps would likely be helpful. For this reason, it can be very frustrating for a parent when the child is evaluated and does not qualify for a diagnosis. It would seem strange that a parent would want their child to be diagnosed with a disability or disorder. Indeed, I do not think the parent wants their child to be diagnosed, but the parent wants some kind of answer or explanation for their child's behavior (and what to do about it). It may be that the parent merely wants reassurance that the behavior is actually "normal", or wants a strategy to use with the behavior of concern. In this post, I want to discuss "subclinical diagnosis", which is what happens when a child's behavior is unusual, but not unusual enough for a diagnosis.

To receive a clinical diagnosis, a child must meet certain conditions. These conditions are laid out in the Diagnostic and Statistical Manual of Mental Disorders (currently Fifth Edition), also called the DSM-5. However, a clinician does not rely exclusively on the DSM-5 for determining if a child has a disability. A skilled clinician has many resources used for understanding development and disorders (such as professional journal articles, books, and workshops), and ultimately the clinician must use "clinical judgment" when determining if a child presents with enough symptoms and enough severity to qualify for a diagnosis. The DSM-5 allows for "clinical judgment", and the clinician should meet with the child's parent to discuss the evaluation results and how to understand the results.

Discussing the results of an evaluation can take a lot of time, but the clinician has a responsibility to help the parent understand what the results mean and how the parent can use that information. If a child meets the conditions for a clinical diagnosis, then the clinician will explain this and what it means (along with recommendations of what to do about it). Alternatively, a child may not meet the conditions for a clinical diagnosis, in which case no diagnosis is given because the number or severity of symptoms is too low. In some cases, a child may not meet enough of the conditions for a clinical diagnosis, but does exhibit a number of significant symptoms, which require an explanation and may need accommodations. This may lead to a "subclinical diagnosis." A subclinical diagnosis may eventually lead to a clinical diagnosis if the symptoms continue or worsen in the future. Symptoms of a subclinical diagnosis may also be distressing for the parent, child, or teachers. The clinician should take time to discuss symptoms of a subclinical disorder with the parents and provide recommendations for how to address these, even though the child does not currently meet all of the requirements for a clinical diagnosis.

If a child does not meet the conditions for a clinical diagnosis, then it may be more difficult for a parent to get services for the child. Typically, a clinical diagnosis is one required part of getting school-based services (special education services) under IDEA (the Individuals with Disabilities Education Act). A child with a subclinical diagnosis may, at the school's discretion, receive additional assistance such as a Behavior Improvement Plan. Therefore, it is recommended for parents to discuss their concerns with the school and maintain a cooperative relationship with the school.

Lastly, if a parent is concerned that the evaluation may not be adequate or valid, then they should always be willing to seek a second opinion from another qualified professional. Evaluations provide a limited period of insight into a child and their behavior. The child may simply not show their usual symptoms during that time, which can lead to no diagnosis.

For more information on diagnosis and evaluations, see the following:

• Diagnosis
• Understanding Diagnostic Results

Tourette's Syndrome

Tourette's Syndrome is a spectacular disorder full of profanity, if Hollywood actually portrayed it correctly. In truth, Tourette's is a neurological disorder that produces involuntary behaviors (very rarely profanity). These behaviors are called "tics", and include motor tics (movements of the body) and vocal tics (which typically produce sounds with the mouth or nose). The severity of the disorder can range from fairly small behaviors that are hard to notice, to very complex or forceful behaviors that can be physically harmful to the person with the disorder. Tourette's is not easy to understand and parents may be alarmed and frustrated by the child's behavior, or may simply try to ignore it and explain it as "something they'll grow out of."

In truth, some individuals do grow out of Tourette's (as they enter adulthood), but many others continue to have tics throughout their life. The tics in Tourette's come and go, increase and decrease in severity, and change over time (sometimes they are said to "move" from one area to another). In addition to tics, children with Tourette's may have obsessive-compulsive behaviors, difficulty controlling their emotional responses, and have more frequent behavior problems. I have had the opportunity to work with many individuals with Tourette's or related disorders, and have Tourette's myself. I wish to share a little bit about this commonly misunderstood disorder.

One thing that has really stood out to me is how often Tourette's goes undiagnosed and untreated. It may be because parents don't know that the child is showing tics or it may be because they do not wish to consider the possibility that their child has Tourette's. There is no "cure" for Tourette's, but there are good treatment options these days, including behavioral therapy ("CBIT" - Comprehensive Behavioral Intervention for Tics) and medication. Medication is usually used for more severe tics that risk producing medical harm, but behavioral therapy is a fairly quick (perhaps 12 sessions) and efficient approach to reducing the severity and frequency of tics. Tourette's is certainly nothing to be ashamed of because it is simply an impulse created by the brain (like blinking or breathing), but many people may feel embarrassed by their tics because they look unusual.

I have written up a short guide for parents discussing Tourette's and trying to answer some common questions (such as, "does my child have Tourette's?").

Tourette's Syndrome

Psychological Sticker Shock

The cost of psychological services can be surprising to some parents, and usually not in a good way. On the one hand, the cost of services for one's child and the benefits of those services should be easily justifiable (for example, consider how much we might spend on maintenance for something as comparatively unimportant as a car). On the other hand, that doesn't necessarily mean it's easy to afford. Insurance coverage for psychological services varies a great deal, and even when insurance does offer to cover psychological services, some psychologists will not accept insurance.

Perhaps the most immediate comfort that can be offered is that psychologists have an ethical obligation (as required by the American Psychological Association) to not exploit patients, to seek to do good and aid the public, and to ensure that they do not harm others. Although the rates charged for service may vary, they should generally be fair. I've written up a guide in an effort to help increase parents' understanding about the cost of services and what those services might include. This guide is by no means perfect and it does not cover all services that might be provided, but it may help parents to make a little more sense out of what goes on in a clinic.

One rule that should always be remembered though: When not sure about something, feel free to ask. 

Cost of Services

What's the Big Deal with a Diagnostic Label?

Diagnostic labels can bring relief, sadness, confusion, or anger. Often they produce all of these emotions at the same time. When I meet with parents to talk about the results of an evaluation, I wish I had an hour to go over the main results, a couple of hours for them to leave and think about it, and then another hour to talk about their questions and what to do next. I usually end up spending an hour or two with them talking about the results and coming up with some kind of immediate plan. Then we make another appointment after they've had time to think about everything and come up with new questions.

Labels can be scary because we don't want our kid to have "that label", for other people to say things or judge them, and sometimes because we don't want to accept that label. A lot of work goes into reducing the "stigma" (the negative thoughts associated with a label), but that work is never-ending because a label means "something unusual" has happened. We may also think that if there is a label, then it will never get better. While it may be true that there are some challenges that will always be there, it is wrong to think things will never get better.

On the other hand, labels can be useful. One of the main purposes of a label is so that we can work toward making things better. With a label a child may get access to services he previously couldn't. We may understand a bit more about why the child does the things he does, or maybe why he doesn't do some things he should. As a result, we might become more patient with our child once we know "what's going on." We can also start using lots of research to find better ways of helping the child.

Labels often seem to create more questions than they answer, but we can start asking better questions. We're no longer trying to find our way through a large, open field. We have clearly marked paths, and can start exploring them. Finding the approach that is best for your child may begin with an evaluation and a label, but it continues with problem-solving and working together.


I have two documents that discuss evaluations and labels in more detail:

Diagnosis - more information about the process of making a diagnosis

Understanding Diagnostic Results - written with one of my colleagues, this one is about questions that often come up after the diagnosis